Chip Chick
“I do not know enough about this to give any advice but I know they still live a love and joy-filled life.”
“I know a boy who was 5 when I met him with Sanfilippo Syndrome and he is now 15. Happiest kid on the planet.”
“He has rough days, but his mother talks all about his journey and he is a happy person. He is non-verbal and mentally acts like a toddler, but finds such joy in everything he does and it is really beautiful to see.”
“He has lived well past his expected timeline as well, which is amazing as his family gets plenty of time to enjoy with him.”
“As someone with a tiny bit of understanding of the condition I don’t believe medically assisted death is appropriate for this situation.”
“It would be a different story if she was in pain constantly, but she’s not. Yes, instead of your daughter being able to do things that most children learn to do over time, she will digress.”
“But if she is loved and cared for properly, it will still be the best few years of her life. She is still able to spend time with you and make those memories.”
“However, I would have a longer conversation with your wife. Is she feeling overwhelmed by the situation and how much care is going to be needed?”
“Because if you look at the situation from your daughter’s point of view, this is all she knows, so make it the best 10-20 years that she has.”
